Can You Hear Me Now?

I’m all set for my appointment with Bioness on Wednesday. I may be here for awhile yet, or home by Friday, it all depends on how quickly my home care can get set up. I was supposed to have a home visit on Friday morning with an OT and PT, but Access/Handi Bus screwed up (no way!) by picking up the wrong person and taking them to my apartment building while we sat in the front entrance and waited. And waited. “Oh, he’ll be there any second”, they told me when I called. Standard answer. We only found out what happened because I overheard the lady on the phone at reception talking about my address and I intercepted “that’s where I was supposed to go!” So my home visit has been postponed to Monday (”we will book a wheelchair taxi and not take Access”), the transition lady who looks after setting up home care won’t be back to get the report until Wednesday, so the earliest I can go home is Friday. And considering my home care needs, I may need to wait a bit for a worker(s) to be available for the hours I need.

So I will still be here Wednesday, and the PT said she’d be interested in meeting with the guy, so I emailed him and told him it’s a go. I’m pretty excited. I also met with a rep from the orthotics place that made my AFO, so making an appointment to go there for a government funded Walk-Aide is my back up plan. But at least this guy is willing to come here and see me, so at least I’ll know if I even qualify for the product in the first place. The Bioness is a superior product, so my wish is that he decides I’m a good candidate to try it out on and get feedback from and gives me one for free!! Hee.

We lost Rick from our table yesterday. They took his name placard away and said “he won’t be coming back”. I guess he had a fall yesterday and is back in the hospital. Sigh. I went to visit Tom in his room earlier and met his wife. He is so weak, thin and sickly looking. I told him I was so worried about him because they replaced him at our table. He said “they’ve given up on me” and I said “no one has given up on you, so don’t you go giving up on yourself!” and his wife said, “did you hear that, Tom?” You can tell she’s scared. She made a comment about spending 58 years with him, and “looking forward to many more” as she kissed him lightly on the forehead. It was really sad. You can see that the Fight is gone from his eyes.

The new person at our table is another GIRL! Her name is Sandy but she’s not very talkative. She has a developmental disability and came from a group home where she fainted and fell. I am no longer the most talkative at our table, that role now goes to Garth. He is very talkative and loves to joke around. His room is across the pod from mine, so there is someone nearby to talk to. I met his granddaughters today, they are so cute.

Nick’s dad brought his camera in, so he is busy with that. Not a lot of exciting things to take pictures of here, you’d think, but a photographer’s eye will find things, and he is uploading his collection to Facebook. I’m not in there, thank God. I swear I would kill him lol I told him he should get a collection of the snoozing heads out by my pod’s TV.

Speaking of, Lawrence Welk is on out there, and everyone crowds around for that! ‘Cept us cool people.

This morning there was a meeting held by the MS Society and the MS Clinic about Dr. Zamboni’s research (and their own agenda, of course). I’ll say now that there were police with guns present, they kicked out the CTV News crew, they didn’t allow for a question/answer period (they only took questions in writing BEFORE their presentation, and chose which ones they would address), and will put “a portion” of the presentation on their website (I’m sure they will leave out the part where they tore into W5 and CTV for bringing this to our attention in the first place). Thank God for W5 and the internet, so we have been able to discuss and read more about it. Thank God for the doctors and vascular surgeons who are excited and looking into it, even if the neurologists and mostly pharmaceutical companies don’t want them to. They said it would be 5-7 years before any treatments would be available for MSers, should the research prove it is a viable action in the first place. I have every intention of being tested/treated before then! My dad spoke with a woman after the talk that had LOADS of info, she was really angry with the way things have been handled by the MS Society/Clinics so far. She told my dad to sit tight for a few months, Zamboni is touring the country and teaching his method to doctors, and there is a LOT of exciting news in the pipeline. She suggested I not go to Poland for treatment as they are using a method that Zamboni does not approve of and it’s not as safe. I see my neuro on Monday and although I don’t expect him to be very positive, I will ask to PLEASE put me on the list for any upcoming trials/studies. Apparently, as of January 23, CCSVI was considered an “official” disease, so I should be able to get tested/treated for it, no? We don’t have the proper equipment here to test for it, but it shouldn’t be long! I will be first in line.

I just spent the past two hours trying to upload a video to You Tube and now I give up. Kitty stuff will have to wait for another day!

Well, once you’ve made “going home” your goal, they certainly don’t waste any time. I’m a “possible discharge” for Wednesday already, and the only reason they are waiting that long is because I won’t be around here tomorrow to talk to, the social worker is off Monday, and my mom is off Wednesday and will be able to get my power chair home in their trailer that day. I am going to try to talk with someone tomorrow morning before I leave for the day, to try to get more time. I really want to get set up with a lock box at the front door so Home Care (and anyone I want) can access a key to let themselves in. AND I have an amazing opportunity on Wednesday afternoon I still want to be here for.

That would be The Bioness Foot Drop System. I saw a short piece on the news about it the other night (and I never watch the news, or barely any TV here at all, so that was fate) and I thought, woah, that is perfect for me! So I went to their website, didn’t see a location in Calgary, so I emailed them and asked. I heard back from a guy in Montreal who said “oh, perfect timing, we are coming into Calgary NEXT WEEK, can we make an appointment to see you on Wednesday?” D’oh! I tell you, it’s fate. I told him about my current situation, and he wants to come to see me here on Wednesday afternoon with the physiotherapist. I didn’t get that email until 7:00 tonight though, so I haven’t been able to ask anyone if I can stay an extra day for this appointment. I think the physio here would really benefit from the visit too, so I hope they go for it.

Now, these units cost several thousand dollars, but I know from researching it that the government is buying 500 units (from a different manufacturer, though) and funding a Pilot Project for those who qualify. So if Bioness is trying to get in on a piece of that action and I qualify, then I should be able to get funded for it. If Bioness just wants me to buy it, I will say no thanks and go to one of the suppliers that the government is funding for the project (I got all that information today, too, from the place that made my AFO). I just need to qualify, which I will know on Wednesday, and agree to many follow up appointments over the next year. I can do that! If it means I will be walking again, a LOT more!! I will have to walk my very best on Wednesday, to prove to them I am a good candidate. You need to be able to walk at least 10 meters (33 feet). Hopefully that is while wearing an AFO.

Anyway, there are a few things I want to get arranged before I go home. Their only concern is that home care is in place, but really, they let another woman with MS stay here until her house was finished being renovated and more suitable for her, so they sure as hell better not kick me out until I have everything I want in place. Except a new apartment, I know I can’t live here while looking for that. Although… house renos/accessible apartment? Isn’t the waiting time similar? I think they played favourites with her. Hmmm…

I just received an email that made me cry. Ange, if you’re reading this, you made me cry! Love to you, and I will respond ASAP.

I tried to have a conversation/screaming match with my roommate tonight. It went kind of okay. I feel bad for her because she is so alone and sooooo bored. Her son comes once every few days, but she doesn’t have the ability to make friends (hard enough with this crowd, anyway!) or a computer or her own TV that she can turn up as loud as she wants. The past few days she has been putting herself to bed at 1:00, thinking (and probably hoping) that it was bed time, until the staff caught her (they don’t respond to those alarms very fast).

Rick was doing better today. I hear his wife is coming to stay here for her recovery as well, so I’m sure that cheered him up. Tom, on the other hand, has been replaced at our table by Garth. I panicked, “what happened to Tom?!” and was told he is too sick and will not be returning to the dining room for meals. Goddammit. Nothing against Garth, who is funny and talkative and interesting and only in his mid-50’s, but Goddammit. Nick reads my Facebook so he knows I’m going home next week, and was all “not fair! I’m going to die in this place!” Geez, I hope not.

Pita, hanging out.

This was one of my Meals on Wheels dinners. Ick. Even Pita just picked at it!

Alarms! Going off like crazy from all these people getting out of their wheelchairs when it’s not safe for them! Mildred! SHUT UP! I’m starting to go nuts here. I want to meditate and spend time alone but it is impossible. My room is in the middle of the pod and in the middle of the activity. Too much noise and too many voices.

There are pros and cons to living in a place like this. The pros being (some of) the staff are nice and helpful, meals are looked after, I am not completely socially isolated, and the MOTOmed. The cons being I have no peace and quiet, I don’t have my comfy double bed (I’m sooooo sick of this single plastic mattress), limited showers, crazy voices and alarms non-stop, I don’t have my cats, Chi Machine, TV shows, coffee maker, independence… I could go on and on. The cons definitely outweigh the pros. And whether I went to a group home or assisted living, most of those cons would stay, and some of the pros would go. They don’t give you regular physio in those places either, because you’re just there to live, not get better.

So I have decided I would rather go back home. I just need more Home Care and I must find a better apartment for a wheelchair ASAP. Now that I know I can lift my right foot to walk in my apartment a bit again, that’s where I want to go. I don’t get to walk here except for a little walk once/day with the physio asst. I can get stronger at home by walking more. It’s not easy, but it has improved since using the EMS and the MOTOmed. My Chi Machine will help, too, since I won’t have a MOTOmed. I just need to make a plan and a routine and STICK TO IT so I continue to improve. The Plan will involve more home care, mornings and evenings, downsizing my STUFF and moving into a better apartment. The Routine will include daily range of motion/stretching with home care, EMS, whatever exercise I can do on my own including going back to the pool twice/week, meditation, supplements, Chi Machine, affirmations, visualization and more inner self work… EVERY DAY. Not sporadically, like I have been.

I know I didn’t have the best life being so isolated at home, but I still liked it better than here. I am meeting with the social worker again tomorrow and I will ask her about access to volunteers that can help me get out more. And with spring coming, it will be a lot easier and hopefully by the next winter I will be stronger., if I stick to my routine!!

Today I had another visit with a physiotherapist, one who specializes in neurological disorders, and has worked with many people who have MS, using an EMS machine. She also said I have good range of motion (must keep that up!) and gave me more EMS tips and electrode placement ideas. I think I will get her to come over when I get back home, too, to give me some ideas for exercises I can do on my table there, and using other areas in my apartment for support. I’m sure there is a lot I can do with what I’ve got, if someone has the creativity and knowledge. It’s so hard to pin down the Home Care physio, plus they are paid by the Health Region and can’t be open minded! This lady was interested in my Chi Machine so I’d like to show her that and get her input. She charges by the hour, of course, but I can pay for another visit. Since I’m going home, they won’t be taking away my credit cards. Or the debt.

Now might be a good time to get my musician friends to play a benefit concert for me. “Help get Donna home, into a new apartment, pay for renovations, get some physio, go to Poland for the Liberation Treatment…” something like that.

On Friday I will be making a home visit with the Occupational Therapist from here, so she can see how I’m set up there and what my challenges are. I’ve had the Home Care OT over many times, so I’m pretty sure I’m as set up as I can be, but another set of eyes doesn’t hurt. She just wants to see how I get to the bathroom and get around the kitchen and stuff. She asked me, after I told her I spent the day at home on Saturday, if I “did any cooking?” HAHA as if I ever did that anyway. But I DO need to be able to heat up food/make coffee/get water etc. like I did before. I’m pretty sure it will be a struggle in the beginning, but it should get easier as I get back into the swing of things. I hope, I hope!

Things around the centre are rather uneventful. My roommate is still quiet, which is nice. Except she is now attached to an alarm, so if she tries to get up on her own, it goes off. She is none too happy about that. I heard her bitching to the NA earlier that she’s “not a baby, so stop treating me like one!” She is sooooo hard to communicate with because she is almost totally deaf and has that dementia thing, so we don’t lay here and talk. Her daughter-in-law says she’s bored to death and maybe it would be better if they kept the curtain between our beds open, but she can’t hear me from here even if I yell, so I don’t see the point.

Tomorrow morning I get my SHOWER!

Rick in the dining room was a mess today. I think he is just losing his will to fight, without his wife by his side. At breakfast he said she was here, so I suggested he get his breakfast sent to the conference room or something so he can eat with her, but I don’t think she was here. The Physio Asst. asked him as he left the dining room if he ate his breakfast, and he said “my wife did”. By lunch time he couldn’t even feed himself. He dropped his soup spoon on his lap and didn'’t react. He spilled his water on his pants and didn’t react. He tried saying a few things to me but no matter how closely I leaned in and asked him to repeat himself, I couldn’t make out a word. His food just sat there and sat there. I asked him if he needed help and he just looked at me blankly. The drool factor was insane, too. Finally an NA came over and fed him. It was pretty bad. I wasn’t there for supper (PT was here until after 5 so I went and ate downstairs with my dad) so I don’t know what he was like by then.

Oh, I just remembered (as I just took two) that I haven’t mentioned StemEnhance in awhile. That’s because I didn’t think it was doing anything for me. So I didn’t bother bringing any with me when I came here. But, over the past month or so my double vision has gotten much worse and the other day when I looked in the mirror I saw how much my wonky right eye had moved around and how terrible it looked! So I called my dad and said “PICK UP A BOTTLE OF STEMENHANCE FROM MY APARTMENT NEXT TIME!” because even if all it’s done is helped my eye and vision, that is enough reason to keep taking it!

I finally took the pictures off my camera so I have some relatively recent kitty pics to share until I get back home to take more!

BAH!

Coming, or going?

Current residents: I think we have three people in my pod attached to alarms that go off every time they try to stand up, so lots of beeping and babysitting in the vicinity. Mildred the crazy talker is still here. One lady I thought was “normal” and went to strike up a conversation with, told me she has 8-3/4 kids. “We started with two, and now we have eight and three quarters.” Further attempts at conversation proved that she is not, indeed, “normal.” There is one old man who can’t communicate but is always trying to wheel himself (at a snail’s pace) into my room. Even when I’m not in here. There are so many old, sad people sitting out in the TV room at any given time it’s a depressing sight to see. I mostly hole up in my room and surf the ‘net. Except when my Soap is on. There is another lady here that watches Days so between the two of us we make sure the TV is on channel 7 by 1:00! Now I can delete all the saved up episodes on my PVR, I think I’m pretty much caught up. It doesn’t take long, a few minutes/week is all you really need. But what happened to Nicole? She was in prison for the kidnapping but I don’t know how they wrote her off (for now). I know she’s having a baby in real life so I expect she’ll be back.

AH called me tonight. “What is it you like? A mocha?” Soy vanilla latte! He showed up moments later with Starbucks and had all the female staff in my pod a flutter. A young, tall, dark and handsome man in a nice suit doesn’t come this way very often. He couldn’t stay long (of course, always on the run) but it was so nice of him to drop by. With a latte, no less. I’ve had more lattes while staying here than I ever did at home! Tee hee. The other night I talked to him about the kitties, and told him he should take them. “My wife is HIGHLY allergic”. I said, jokingly, “well, get rid of her” and he said, not so jokingly, “I’m working on it”. He then told me a little about what is going on at home right now, and it looks like there could be another separation happening there. No big surprise, but we’ll see how long this one lasts.

I don’t think having a latte at 6:30 pm was the smartest move ever.

That was written yesterday. It is now Saturday night and I recently got back from an 8 hour visit to my home! I got lots of work done! I cuddled kitties! I didn’t cry! I walked lots! The swelling in my feet went waaaay down! I used my Chi Machine! Of course the swelling will come back by tomorrow, but it was nice to see all I need to do is sit in my lift chair with my feet up and walk to and from the bathroom a few times to get it down. Oh, and I’m sure my Chi Machine helped. Man, I miss that thing.

I figured out that if I can move into an apartment with wider doorways/wheelchair access to my office and bathroom, I could definitely manage at home with a little more home care. Even just another hour at night. I’d even be able to work more, sitting in my comfy power chair. It would be so much better than assisted living. I’d keep my independence and my cats. I’m going to talk to them AGAIN about self-managed care. I don’t care about all the reasons they said it wouldn’t be good for me, I think I have many reasons why it would be good. And it’s cheaper for the Province to fund me for that, then it would be to live in assisted living or a group home.

Nick has come by my room the past couple of nights, just to yack. The staff over here give him a hard time when they see him in my room; the staff on his pod could care less if I’m visiting him. I think it’s because my room is very open and everyone can see in here, whereas he is tucked away in a corner where no one notices. Although Nick says the staff over here are busy bodies who need more to do lol

We were talking last night about living arrangements, and Nick said “you have to keep your independence”. He’s right. I talked about the Law of Attraction, and how the more help I started getting, and once my dad came back into my life and started doing everything without me asking him to, I lost the ability to do it. He said that is exactly what happened to him, that when he moved in with his dad and stopped doing a lot for himself because his dad did it (housework, shopping) he lost more and more until he ended up here. Very familiar story! Unfortunately, we can’t tell people to STOP helping us now, because we really have lost the ability to do this stuff ourselves. But the more we can do, and try to do, the better. I growled at my dad today when he went to lift my right leg out of the car before I even tried to do it myself, first. I have to teach him to stand back and watch me try, first, then help only if I can’t. Instead of always being 3 steps ahead of me and doing stuff for me before my head has even registered that I need to do it.

That’s why even though I grunt, groan and bitch every time I get myself to the bathroom here and need to one-handedly pull up these damn Pull-Up thingys AND my pants, and get myself back into my wheelchair and do my best to get my right foot up on the foot rest, I won’t stop doing it. I am the one that asked to get out of the diapers and into the pull-ups so I could try on my own! And yesterday I didn’t even need a nurse’s assistance to get my foot back into the right place. I’ve been 100% independent in the toilet so that’s pretty big news around these parts. I made sure they documented it!

Tom still hasn’t been in the dining room for meals, so I went to visit him today. He had been moved to a private room, and there were paramedics in with him. Yikes. I tried to go again later, but the paramedics were still there talking to him and said they were “taking him somewhere”. That’s not good. Chuck has been replaced at our dining table by Rick, who it turns out used to be one of Nick’s teachers. He has Parkinson’s disease and his wife (who also has MS!) is his primary caregiver, who has been hospitalized so Rick is here until she’s raring to go again. I just hope they don’t meet the same fate as Clive and his wife. Clive was the man who sat at my dining table in the care center in 2006, who also had Parkinson’s, who had been a teacher of mine, whose wife was his caregiver… but they had to be split up because of their different care needs. That’s a part of marriage you just don’t see coming. You’re supposed to take care of each other until you die, right?

Rick drools a lot. I told him on Monday he’d get the rounds of physio assessment, exercise options, see a doctor… he told me he gets his exercise by rescuing drool lol

I brought my memory card from my camera with a bunch of un-uploaded cat photos on it. I need to go through that tomorrow! If I have time between my mom coming to spend the day, and Shawna coming to give me a shower around 4:00. Shower! Whee!

“All is well. everything that’s happening supports my highest good. Out of this situation only good will come. I am safe.”
~ Louise Hay

I need to say that affirmation many times/day. I’ve been putting off updating because I can’t talk or think about the meeting we had on Thursday without crying. I thought I’d have more time to keep my apartment and my cats until I figured out where I’m going to live/how much I can improve between now and then. Unfortunately, things don’t work that way. As soon as you’re put on a waiting list for assisted living or a group home, you start paying for it. I guess they want you ready to move in the DAY a spot becomes available, even if that ends up being a year from now. So if I have to start paying for that housing right away, I can’t also pay rent on my apartment. So this week I have to give notice to my building and I have until the end of February to pack up my stuff, get rid of a lot of it, put some in storage until I know where I’m going. And my cats? Here I go, crying again…
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I can’t take them into a group home. Which is probably the best place for me. And if I decide to go the assisted living route, I could eventually end up in a place that accepts pets, but I’ve been told you can only bring ONE animal. And if I was even able to chose one, I would be keeping her in my room only, because I’d only get a room, and that is a) not fair to the kitty, and b) not good for me to live in the same room as cat litter. Going back into my own place with self-managed care won’t work for me, for many reasons it would take too long to list here. So, I’m a bit of a mess these days, if you can even imagine. And I know my cat-loving readers can.

I wrote the above several days ago. I’ve been crying too hard when I think about it too much, so I’ve been avoiding this. I’m doing a bit better now, because I decided that even if I have to start paying the group home/assisted living rate March 1, I’m still going to keep my apartment for March. I can pay both for a month and my parents will help. That gives me a bit more time to IMPROVE and make arrangements. Plus I have some amazing friends helping me find foster parents for my kitties. The plan is that I will get them back, and this calmness has come over me recently in knowing that will happen. I’m sure of it. But I’m going home for a few hours on Saturday, and I’m pretty sure once I see the kitties I will be a crying mess again. I have to BE STRONG!! I know this is temporary. I will figure something out so that I can live in my own place again with my cats. It will work out! I’ll win the lottery, or something.

It might even be The Liberation Treatment, if they can speed up the research and treatment options!!! Please sign that petition if you haven’t already.

One of the reasons I feel it is going to be fine, aside from my faith in believing everything works out the way it should, is Cheryl Richardson. I follow her on Twitter, and she offered up some Twitter Coaching the other day. I wrote her and told her in a nutshell what is going on, and asked how to handle this? She sent two very thoughtful tweets back, saying she would cry too, ask my friends for help, and to sit back and ask “how can I make this perfect?” So not only was I thrilled to get a response from her, (not quite the same as writer for The Office telling me to DATE AROUND LIKE CRAZY! hehe) but later that evening I opened up Hay House Radio on my iPod Touch (did I mention Nick is letting me use his WiFi??) for the first time in over 6 weeks and said to myself “if Cheryl Richardson is on everything will work out”. And, out of the 60 some odd people who host shows on that station, it was Cheryl who was on the air. So, it will all work out. But that won’t stop me from crying sometimes. My poor friend Pam, she thought she was doing something nice last weekend when she went to give me these little calico kitty ornaments. We hadn’t talked about this, so I shocked her by bursting into tears. She skulked and slowly put them back into the bag they came from. Oops.

So, aside from that, what’s going on around here? My new roommate is dream. She’s 91, legally blind, deaf, dementia really bad (wow, the anxiety you must be under when you live like that, believing no one knows where you are, or knowing where you slept the night before, or where the bathroom is… “I think you better call the police”) but she SLEEPS LIKE A LOG! I love her.

Tom from the dining room hasn’t been at a meal for days and days. I think he’s really sick. Chuck went home today. Something is not right when a 94 year old deaf/blind man gets to go home while Nick and I are here! I learned a bit more about Nick’s condition today, which makes more sense. I didn’t think cerebral palsy was so aggressively progressive… turns out he did something to his neck, maybe 20 years ago (he doesn’t even know what) which started this pinching on his spinal cord which has slowly gotten worse. But it’s been moving fast, the last couple years. He is waiting for a surgery that should help him. But every week he seems to be getting worse and more paralyzed. It’s scary.

One thing that is not helping either of us is the Physio Asst. has been sick all this week so we haven’t been getting our time on the MOTOmed! Or my daily walks! Everyone is suffering without her. The main Physio lady can only do so much. She did take me for a walk yesterday, but that’s it. There were some student nurses here on Monday, so I got them to take me for a walk, too. But two little walks over the course of 9 days will not be enough. On a positive note, I got my chair pimped up so that I no longer have to wear a strap around my thighs to keep my foot on the rest and my right knee from falling out. So I can independently get myself to the toilet so I’m now wearing undergarments I can pull down! I still have trouble getting my right foot on the foot rest, though, and my shoe usually falls off, so I end up riding out to find a nurse to help put me all together again. Until I am 100% independant with that they will assume I need full time care. I’ll also see how I do with the bathroom when I get home on Saturday. OH, THE THINGS YOU TAKE FOR GRANTED. Don’t tell me you think about that issue on a daily basis!

Visitors. Let’s see… Shawna came by and brought me her portable DVD player and a bunch of movies! Pam was here and brought lunch that day. My brother’s girlfriend came by on Sunday morning to shower me again, but this time a certain staff member bitched about me taking up time when there are other scheduled showers (10 MINUTES! I take all of 10 minutes, if even that! WTF!) so that put an end to that. I have Shawna coming later on Sunday afternoon to help me, but after that, I just don’t know. That Sunday morning slot worked perfect for us. I’m SO MAD. I know which staff member it was, too, so I officially hate her. She doesn’t work on my side, so I only ever see her in the dining room. But she is friends with Nick so I can’t bitch about her to him!

Of course, my dad comes regularly and my mom comes into the city twice/week. I try to make my dad “take the day off” as much as possible, but he wants to make sure I get hooked up to my EMS Machine so he’s here a lot unless I assure him someone else has done it! Speaking of, I have an appointment for a visit from a physiotherapist who specializes in neurological conditions next week. Hopefully she will give me more EMS tips.

Today the physiotherapist here came into my room and said “a little birdy told me you have a blog”. Gulp. “Word travels fast…” Many nurses have walked in while I’m writing in here and I may have mentioned its existence to her assistant. Now I feel bad if I’ve ever vented anything negative about the physio here. I really like her, and I know she has a lot of knowledge and everything. It’s not her fault they don’t have the resources to work closely with everyone. I just vent here. But I still hope she doesn’t find it. Unless she has already, and is holding it against me. “Would I find anything interesting about me there?” Not YOU, as a person! As a physio department that lacks time and resources, perhaps.

I finally got my call from the Sleep Clinic, and tonight I need to sleep with this insane sleep monitor hooked up to me. I think it’s for detecting sleep apnea, which I know I don’t have, but they will probably find out I do anyway. I told them I want to get off my addiction to sleeping pills, but I have to spend the night all hooked up and taped to this $10,000 machine, anyway. I have an instructional DVD, but I still need assistance putting everything on and testing it and it’s after 9:00 and none of the nurses here have yet confirmed they know what it is. It has to be returned by 9:00 am tomorrow, so someone better be able to help me!

I received a parcel from my dear friend Emma today. She is going to school in Scotland at the moment. And what did she send me, from all the way across the pond? A package of assorted Green & Black’s chocolate, that’s what. LOVE.

Yesterday I went to see a Physiotherapist about EMS/TENS. He was fantastic. He spent an hour with me and my dad, gave us a few tips on EMS, although he admitted he’s not a specialist in MS and not sure of the EMS effects on it. He did a regular assessment on me and figures there is hope for improvement. He told me it’s a good thing I asked for regular Range of Motion exercises from home care, as my RofM is very good. I just need to work on my strength. He said to not bother with the TENS part because it’s for pain, and to focus on EMS. Also it would be best if I cold be doing some kind of exercise while it’s on me. I do remember Dr. Terry Wahls talking about how she contracted her muscles while the machine was going, so I will try that too. He gave us the name of a physiotherapist who specializes in neurological problems, and may know something about MS and EMS. She also comes to see YOU wherever you are. He also gave me a 3 page printout he found in their files about how effective EMS is for MS, which is an excellent paper to show the physiotherapist here. He told me to utilize the physio here, tell them what I want to do and not stop until they help me. “They have great physio there, they just don’t have the time and resources. You’re intimidating them because you have been going out on your own looking into helping yourself. Don’t let them be intimidated; tell them you want help with a program you can do on your own.” He also told me to go back to OPTIMUS (outpatient rehab program for MS patients at the MS Clinic) as they may be able to give me more info about EMS and MS (although I doubt it, the physiatrist there already told me they don’t use it. But after reading this paper I DON’T UNDERTAND WHY NOT!!

After all the time he spent with me, the full assessment, the information and guidance he passed on, he turned around and refunded our money. “I don’t specialize in MS and can’t really help you, so I’m refunding your money”. Gulp. What a great guy. If anyone wants the name of a fantastic physiotherapist in Calgary, contact me.

Last night Nick and I got into a round of funny comments on Facebook about “muffin” and it was kinda naughty. After laughing my head off for 5 minutes, the NA came in my room with the evening snack, and said “would you like a muffin?” I thought I might die.

Today, my roommate Mary left to move into assisted living. The staff had promised me they would bring me a quieter roommate. The nurse came in this morning and mentioned she had someone in mind, but would “talk to you about it tomorrow”. I thought… my God, does this mean I get the room to MYSELF tonight?!?! Yes, yes it does. “The hospitals want us to take their patients out of the emergency room as soon as possible, so…” it will only be for tonight. They are doing me a huge favour, so I better sleep good tonight! Normally when they move someone out, they move another body right in. So I’m lucky they are being so nice. Last night, actually, I slept quite good. I owe that to the soothing sound of Peter Katz’s voice. I put him on repeat on my iPod all night, and will do that again tonight. Thank you, Mr. Katz.

Who, by the way, sent me an email yesterday that he would play for me when he is here in April, “no matter where you are”. *smiles* I have been listening to the song he recorded with Glen Hansard nonstop, as well. “First of the Last to Know”, on his soon to be released next CD. I get all tingly as soon as Glen Hansard starts singing!

Today after lunch I went home again. I got quite a bit of work done, but I really need to get my accounting software on this netbook so I can work from here, too. I can’t sit at my desk for as long as I need to in order to get a lot more done! It’s frustrating. One big problem is I don’t actually own the software and my client can’t find the disc! I also spent a lot of time with kitties. Enough to make me cry again when I left them. It seems like I’m able to walk in there about as good as I could before I ended up needing to come here, and it would probably be better if I didn’t spend all day in wheelchair here. A big part of my mobility at home is my electronic lift chair, which helps me stand up, and the bare feet on carpet thing. I do think at the meeting tomorrow I will ask about how to get into a more accessible apartment with self-managed care. I need a LOT of care though, so maybe a group home… if I can find one that takes cats!!

Tomorrow is the Big Meeting to discuss my future. My parents will be there, as well as my home care nurse Gail and the social worker and transition person on staff here. Wish me luck that they know of places suitable for me!! I know Mary made the choice of her “top three” but didn’t get into one yet. First you have to go to the first available bed just to get into the system, then it’s easier to move you around once you’re in when one of your top choices becomes available. I’m unsure whether I should just go into assisted living now, or try it at home with self-managed care first, just to need to do this all over again in a couple years. *Sigh*.

I’m falling behind on this thing again. I have a lot of time to update, but I’m still sosososo tired it’s difficult to function enough in order to do it. On a positive note (I hope), Mary is leaving on Wednesday. Now I just have to hope that my new roommate will be quiet and won’t need to be checked/changed several times/night, so I can SLEEP.

Nick and I have definitely become friends. I mean, he’s not an open kinda person so I may never find out everything I’d like to know about a friend, but he is definitely going to make my time here more bearable. Even though he probably loves Sarah Palin and has some pretty strong (opposing) views on things that are important to me, he doesn’t seem to push it on ANYONE so that’s cool. He lent me The Butterfly Effect DVD (I had never seen it! Man, that was freaky. I wasn’t sure I’d make it through, after that bit with his dog) and he has an awesome sense of humour. It turns out he has the exact same EMS/TENS machine as me! He had never even used it and doesn’t have anyone to help him with it, so I went into his room the other night to show him and get him set up. It was like the blind leading the blind! Between me only having use of one hand and him having limited use of his, not to mention it’s a small space and we’re both in big power wheelchairs, it was… difficult. We somehow managed to get both his arms/hands hooked up, but I’m not sure if it’s going to do much for him. No matter how high we turned it up, he couldn’t feel it in his arms. That’s not good. I don’t know anything about cerebral palsy and if EMS is safe, but I’m going to see a physiotherapist tomorrow and ask him.

That’s right, I’m staying in a place that has physio on staff, yet I’m going out to see another one. This one apparently has good knowledge of EMS/TENS and supports its use greatly, so that’s why I’m going. The physio here don’t have time to give me guidance if they even care about that, so I’m going to see someone who will. My dad will be with me and considering he hooks me up 90% of the time, it will be good for both of us.

My mom and Bob came by on Saturday, and I honestly can’t remember if anyone else did. Gah. On Sunday, however, my brother’s girlfriend came by early in the morning and gave me a SHOWER! It worked out great, because she dropped my brother off at work at 6:30 am (ugh) and then she came here and I was showered and ready to be dressed around the time the NAs would be coming by for my morning routine, anyway! She said she would come every Sunday to do that, so YAAAAAAY! Two showers/week and a hair wash from the salon another day, I can just squeak by with that. After I was dressed we went down to the cafeteria for coffee. I ate a tea biscuit but I also bought a muffin, because I thought I was so hungry, but that muffin is still in my drawer. Of course when I mentioned to Nick I have a muffin in my room, he repeated it back to me as a question. Which brought up the story that I’m on Twitter, and one of my friends once tweeted something about eating too much muffin, to which I replied “you can never eat too much muffin”, after which a bunch of lesbian groups started following me. He laughed, and laughed.

See, I could never have that conversation with anyone else here. Thank God there is someone here my age with a sense of humour. Tonight Chuck asked me at dinner if I ever ate a weiner. “I sure do like that,” he said. It’s a good thing he’s blind, because Nick and I were about to lose it. The other day over his breakfast sausages Chuck went on about his love for weiners. “They’re so easy, you don’t have to fiddle with them much”. Okay, STOP.

Back to Sunday. At lunch time, my friend Kim came by with her husband Rob, bringing with them not only a latte and some lunch, but a fancy cupcake from Babycakes!! So I can wipe that item off my 101 list. Kim and Rob were in town to host a sweet 16 birthday party for their daughter the night before. Lucky for me! I sure hope they can get into Calgary again soon, they’re awesome. I also forgot to give Kim her Christmas present, so she HAS to come back.

I have a cold. Lovely. All the lack of sleep has caught up with me, I’m so run down. Shoveling back Cold FX, and my dad came by today with the GOOD kleenex. And a cheap comforter for my bed, I finally decided I want to sleep with something besides their crappy blankets.

So I’m going to do that now, nighty night!

I’m so tired. I just want to sleep more than a few choppy hours/night. I asked a nurse yesterday if she had ever worked with anyone addicted to sleeping pills, to help them get off of them. She said she had, but it’s never been successful. I watched Dr. Oz the other day and he had a woman on who is addicted to sleeping pills. Her story was very much like mine, except she’d only been taking them for a year, not EIGHT YEARS like me. They sent her to drug rehab, and she was told she’d probably have about 5 nights in a row without any sleep at all, which is a living hell. But then she should be okay. Well, I figured, I’m barely sleeping anyway, so why not go through that now? I would not be able to function in the least without a couple hours sleep, but since I’m in this place, if the staff knew what I was doing, maybe they’d just let me stay in bed for five days and let me get to the other side. Wash me and feed me from bed, like they do for many that can’t move. But no, she said “this is not the time. You’re under enough stress here, you don’t want to put yourself through that. You are here to get stronger, and you can’t afford to go without even that 2-3 hours sleep. Wait until you get settled somewhere.” Sigh. I think this is the perfect time to do it. I’ll never be able to do it without round-the-clock care. My energy sucks because I am getting soooooo little sleep, and I think sleeping pills are just making everything worse. I want this crap out of my system. And if I’m supposed to be getting stronger here, then move me to a room where my bed isn’t beside the door and my roommate doesn’t need to be checked/changed 2 or 3 times/night!!! I can’t sleep through that. It’s making me crazy.

My roommate had a fall today, while she was transferring to her bed from her chair. Or something like that. I heard her say “oh, I’m going down! Oh, I’m down!” I rang my bell thingy and went out into the main room and yelled “Mary fell!” I swear to God, I have never seen the staff move slower. Sometimes they are truly useless. One lady was feeding some man his juice, and she was all, “oh, where’s Leeann?” without making any effort herself. There were two others yacking in the hallway and they looked all dumbfounded. “Uh - Mary? Mary who?” My mom was here too and between the two of us we tried to get everyone’s attention, and they were all like “huh? what? who?” until finally someone clicked in and went to our room. Geesh.

Nick added me as a friend on Facebook today. That means I had to delete the link to my blog from my page, and any reference I made to it. I just have to hope he never finds this. Not that I’ve said anything bad, but, you know. I talk about him and the people here and although I (mostly) use fake names, it’s pretty obvious who I’m talking about. So, fingers crossed.

Amy went home yesterday. She only had some back pain, so I guess they finally decided she could go back home. 93 years old and still ticking pretty strong. So we have a new person at our dining table now, a 94 year old blind man named Chuck. That makes me the only girl again! Chuck seems super sweet. We chatted a lot at breakfast and lunch. He’s “all there”, too. Just very old, deaf and blind and not managing so well on his own. His wife has MS too, but I’m not sure if he said “has” or “had”. She either “does” or “did” live at another care facility in the city.

I didn’t see him at supper because my mom and Bob came down and brought PIZZA!! Earlier in the day I asked Nick if he wanted to join us. He loooooooves pizza. So I think we’re actually becoming friends, not just on Facebook. Mom and Bob were stuck in traffic for awhile, so Nick and I sat down in the cafeteria for at least half an hour, waiting, and talked a lot. Well, I talked a lot and asked most of the questions. He DID, however, ask ME a question about MYSELF. I think as long as we stay off political discussions, we may be okay. It’s like I told my stepdad, I’m 41 and Nick is 42, so we sort of have to be friends in a place like this! It’s law. Oh, and the question he asked me? “So, are you into sports at all?” Heh. Men.

Speaking of men, this next part is for the guys… my period doesn’t seem to want to visit me here. I am almost two weeks late, so I guess I’m skipping it. I’m never late, so this is weird. It may be my body is under stress from not sleeping or being in any of its usual routine, or I could be hitting perimenopause. I better read that Christiane Northrup book I bought.

The above was written yesterday. I can’t believe it’s mid-January already and I’ve been here almost a month!

I didn’t get home Sunday like I’d planned, but I did get home on Tuesday for a bit. I need more time, though. There is ALWAYS work to do, even if I swear I’m not going to go into my office. And I still haven’t used my chi machine and I have sooooo many shows to catch up on! Pita meows so much when I’m getting ready to go, it breaks my heart. She didn’t leave my lap, this time. I want to stay there sooooo bad! At some point I have to work out something where I go home for the night, with help there.

I had an appointment in early December to go to the Seating Clinic to get the foot pedal on my power chair widened. I cancelled because we had a snow storm, and I didn’t trust Handi-Bus to arrive on time or get me anywhere in less than 3 hours. So I told the guy, “I’ll see ya in the Spring”. Well, guess where the seating clinic is? On the Lower Main level of this very building. So I just went right on down there and talked to the guy, and now have an appointment on the 25th. Which I won’t have to cancel no matter what the weather!

I keep forgetting that one of the ladies here made me a beaded necklace. Actually, she made me two, after the first one was waaaay too small to go over my head, but too big to wear as a bracelet. She is developmentally disabled (she seems to have the mentality of a 6 year old, despite being older than me) and always sweet and joyful, so when the second one she made was no bigger than the first, I didn’t have the heart to say anything. So my brother’s girlfriend had the smarts to tie them together, and now it is the perfect size. And very colourful. Beth gets excited when she sees me wear it and so disapppointed if I don’t (I try to remember to put it on every day). She also says “that’s my friend Donna” every time someone pushes her by me in her chair (she is walking more though, I think she had a fall and broke something, and is probably headed home again soon).

I hope all y’all are doing what you can to help the people in Haiti. So far I have just done so via texting, but will give more via the Red Cross, as well.

Oh, that was a yawn. Off to give sleep another shot. ‘Night!